I met with my doctor today and learned that not only does she have a different take on my scan from last week, but that she has also really been putting up the good fight for me.
She said that the new tumor they thought they saw in my liver she does not believe is new but just easier to see because of the fact that the inside of it is dead. I don't know anything about reading CT scans, but I do like the sound of my tumor dying.
She also says that I am having an inflammatory reaction to the medications I am taking right now. This is what she thinks is causing my increased coughing and all of the polka dots all over my arms and legs and she thinks it is also affecting my scan. I can't explain that one to you at all, I really don't understand, but what she said sounded good and she was able to convince the people in charge of the study of her theories so they are going to let me stay on the study for now.
According to the way the trial is written, if you have any progression with your cancer in the first 6 weeks, then you are automatically out of the study. They said what they saw with my scan was progression and therefore I am done. But she convinced them that what they were seeing in the scan is not progression and she backed it up with my CEA (tumor marker) numbers and the fact that they have always indicated progression with my cancer. (Just a refresher, that number was still down the last time I went in and that is what convinced the other doctor to go ahead and let me get treatment last time.)
I will get another CT scan in 6 weeks. I really hope that one proves her right, otherwise I probably will be out of the study. The study requires that my CEA number be followed so that is the only tumor marker they have been tracking since I started the study; but today my doctor requested the lab to start tracking another one, CA 19-9, as well. With two tumor markers being tracked, she is hoping to have more information to tell if my cancer is progressing besides just the scans.
She also told us about another study. I don't know the details of it. She didn't go into a whole lot of depth and I didn't ask questions since I didn't want to waste her time on something I don't need to worry about right now but it is for a drug that has virtually no side affects but you have to have the right genetic qualifications for the drug to even work for you. She has already sent a sample of my tumor to be tested to see if I am a candidate for that study if/when this treatment fails.
Now that is one thing that was interesting she said today. She actually said, "...when this treatment fails, it will eventually..." I didn't really understand that since while this treatment does fail for some, others have been doing quite well on it and a couple of people have gone into complete remission. So I am not sure why she is suddenly thinking this treatment will definitely fail. I didn't ask her about that. I know I should have.
The news she gave me I didn't enjoy hearing was that since the tingling in my fingers and feet (from the oxaliplatin in my last treatment) is going away, that means I can eventually go back on the traditional chemotherapy treatment I was on, folfoxiri. I thought I was done with that. She said that treatment failed after they took me off of the oxaliplatin which was one part of the treatment, but that if we add that back in, it might continue to work with all of the drugs in combination again. I know I should be happy that I have another treatment option and it is one that worked for me for quite some time, but I am just not excited about doing that one again.
The other great news we got this week is that the Charity Care we had applied for through the hospital was granted to us. Now, much of the financial stress this has been putting us under will be relieved.
We have truly been blessed! Thank you for all of your continued prayers and support. It is clearly getting us through all of this quite well!
Thursday, August 20, 2015
Monday, August 10, 2015
The latest news with Clinical Trial Treatment #4
Today was my 4th treatment on the clinical trial and my first CT scan since starting the trial. My results were not definitively bad or good. My scan showed that the tumor in my liver has grown. That is considered "progression" of my cancer and is reason to stop the trial since this treatment does not appear to be stopping the progression of the cancer. My doctor is currently out of town so the other doctor who is running this trial came to talk with me. Her first inclination was to not have me go through with treatment today. But then she saw that I look really good, I am still very active, I feel good, my weight is stable and other than the fact that I believe my cough is increasing, I have nothing to complain about. She understands that you can't make all decisions based on scans and numbers, but also based on how the patient is doing and feeling.
If this treatment is not working for me, then there would be an advantage to not getting treatment today because they like there to be a four week window between new treatments to give the old drugs time to get out of your system before starting a new drug regimen. But, what if this treatment, while not stopping the progression, is at least slowing it down? The doctor I spoke with was struggling to decide what to do and didn't want to make that decision for my doctor. Then she decided to check my CEA number which is a tumor marker and gives an indication as to how much the cancer is progressing. When the previous chemotherapy stopped working my CEA number got up to 25. After one treatment on this new clinical trial that number went down to 15, indicating that it was helping. Today my number was 14. When she saw that she decided to go ahead and have me get my treatment today.
I will continue to take the pills every day until my next appt. which is on Aug. 20. At that time I will be able to meet with my doctor and discuss my options. While it was known from the beginning what my plan B would be when plan A failed, it is not known at this time what plan C will be. The fact is, they don't know of any other obvious, good options for me right now. They will do some research and see what other trials are out there. It might mean going to a different hospital and starting over with a different oncology team. We just don't know.
There is the question, why are all of these decisions based on a tumor in my liver? What about my lungs? How are they doing? My liver contains an actual tumor. That can be measured very precisely and we can know how much it has grown or shrunk based on measuring its diameter. My lungs, however, do not have a tumor. The cancer is diffused throughout the lungs and it is very hard to quantify any increase or decrease accurately. Any change that has taken place has been minimal enough that it isn't very obvious how much change has taken place. Of course I can tell a huge difference between now and back in October, but as far as measuring cancer growth, my lungs are not a very good source of information.
If this treatment is not working for me, then there would be an advantage to not getting treatment today because they like there to be a four week window between new treatments to give the old drugs time to get out of your system before starting a new drug regimen. But, what if this treatment, while not stopping the progression, is at least slowing it down? The doctor I spoke with was struggling to decide what to do and didn't want to make that decision for my doctor. Then she decided to check my CEA number which is a tumor marker and gives an indication as to how much the cancer is progressing. When the previous chemotherapy stopped working my CEA number got up to 25. After one treatment on this new clinical trial that number went down to 15, indicating that it was helping. Today my number was 14. When she saw that she decided to go ahead and have me get my treatment today.
I will continue to take the pills every day until my next appt. which is on Aug. 20. At that time I will be able to meet with my doctor and discuss my options. While it was known from the beginning what my plan B would be when plan A failed, it is not known at this time what plan C will be. The fact is, they don't know of any other obvious, good options for me right now. They will do some research and see what other trials are out there. It might mean going to a different hospital and starting over with a different oncology team. We just don't know.
There is the question, why are all of these decisions based on a tumor in my liver? What about my lungs? How are they doing? My liver contains an actual tumor. That can be measured very precisely and we can know how much it has grown or shrunk based on measuring its diameter. My lungs, however, do not have a tumor. The cancer is diffused throughout the lungs and it is very hard to quantify any increase or decrease accurately. Any change that has taken place has been minimal enough that it isn't very obvious how much change has taken place. Of course I can tell a huge difference between now and back in October, but as far as measuring cancer growth, my lungs are not a very good source of information.
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